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Thread: HeadSmart

  1. #1
    Official RnS Addict WB54's Avatar
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    HeadSmart

    My wife was diagnosed with a primary aggressive brain tumour in Dec 2016. Brain cancer is one of the largest killers of middle aged men and women and is the most underfunded cancers for research and clinical trials.

    My wife's initial symptoms were very vague, numbness of the face, anxiety, headaches, IBS and other minor issues. We saw the GP 3 times, were ejected from A+E twice and nobody even considered the possibility that this could be a brain tumour, despite all her symptoms be classic signs and despite there being simple monitoring which can detect seizure activity. Although this failure to diagnose would not have changed the situation, it had a huge psychological affect, not being believed in those early stages.

    Her tumour is a Grade 4 Gliolblastoma, an incurable brain cancer which cannot be wholly removed by surgery, radiotherapy or chemotherapy. All the available treatments do is suppress re-growth until the patient cannot take any more treatment or the cancer develops immunity. The average prognosis for GBM4 is 18 months which I pleased to say my wife has outlived and with clear scans she's trying to enjoy life.

    The Brain Tumour Charity funds research and campaigns, one of which is HeadSmart, which aims to raise awareness of the symptoms, especially in children where their response won't be articulate.

    https://www.headsmart.org.uk/

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  3. #2
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    I'm Sniper's wife Fiona and was diagnosed around the same time as your wife with a primary brain tumour. The tumour is an Oligodendroglioma grade 2 and I have had 30 sessions of radiotherapy and 4 rounds of chemo (Lumstine and procarbazine). Addenbrookes tried remove the tumour but due to its location they wouldn't risk it, there was a high risk of me becoming paralyzed. I finished treatment in March this year and my last scan showed a reduction in the size of the tumour. I'm now on watch & wait, if there is signs of growth I'll be back on chemo.

    Mine was discovered after I started having seizures, these are not nice and leave me unable to walk afterwards for around an hour. Its blinking scary as I get very little warning. People say I look really well and therefore must be cured, far from it.

    I have lost several friends to this nasty cancer. A little boy I looked after died 4 years ago from a brain tumour, my best friend at school died at the age 38 and 3 family friends in their 60's & 70's . One was diganosed around the same time as me and past away half way through his radiotherapy, his was a secondary.

    People know all about breast cancer, prostrate cancer, lung and bowel cancer, but sadly very few understand brain cancer (that's what a brain tumour is). Dame Tessa Jowell's fight with this disease has raised its profile, but more needs to be done. Posts like ours on here do help.

    The Brain Tumour Charity is brilliant.


    WB54 and Mrs WB54, please feel free to message me if you want to chat. xx

    Fiona

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    Stroker Kustom Jim's Avatar
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    It just goes to show while everyone is busy with their lives all around us there are life changing things happening and we have no idea.

    Thanks for sharing and good luck!

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    All the very best

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    I'm a newbie !
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    Prior to my brain tumour I was a Scout leader and organised big events, ran a Beaver Colony and was really active. We'd do car shows most weekends, loads of camping with Scouts, at car shows and with friends and I'd walk every where, now I struggle to walk a mile.

    I had a seizure tonight at tea time and am wiped out now.

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    Official RnS Addict bartnpenni's Avatar
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    Had some **** go wrong at work this week and got really ****ed off, now sat here reading this and feeling very shameful.... My best friend is going through similar treatment for her 3rd lot of cancer including brain tumours and she's now stuck in a wheelchair practically paralysed down her left side, its devastating to see but she keeps going. Very best wishes to all of you xx
    ------------------------------------------------------------
    Dippus Shittus

    I know Latin.....

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    Best wishes to all !

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    Rekindled Dream Chunky's Avatar
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    Very humbling recounts of your situations. These only go to confirm there are people much worse off. Good luck and best wishes to you all. x
    Life's journey is not to arrive at the grave safely in a well preserved body , but rather to skid in sideways, totally worn out, shouting "Holy shit ... what a ride"

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  15. #9
    I'm a grown up member now !
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    My thoughts are with you - it just goes to show the invisible battles some of us face - I suffer with chronic migraine, which I know in no way compares to tumours/cancer etc, but for the 1st few years (i've suffered over 10 years) I did wonder if it was anything more serious. My husband gets frustrated when I'm ill as I can't do anything, my build is easily a year behind due to my health, and when I had a breast cancer scare 2 years ago he said he was ready to postpone his own build in order to finish mine for me - well I got though that and I will continue, slowly but surely! We are resilient creatures, be kind to one another xx

  16. #10
    Rods 'n' Sods Junkie rickbwigan's Avatar
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    people moaned that there shouldnt be a health section in a car forum, but if the likes of this thread, and others like the depression thread or the weight loss thread helps even 1 person get through bad times in their life, it proves it is worth it.

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